Hummm…. 6-4-0-8-22-0… sounds like a bunch of lotto numbers. Maybe we should play ’em! Jake finished his 7th round of week-long chemotherapy last Tuesday and less than a week later, here we are, back in TCH. Yesterday we went into Clinic to find his hemoglobin at 6, platelets at 4, ANC at 0, and fever at 102. He actually had a really good week in the hospital during his chemotherapy last week. His nausea was completely controlled and he bounced all over the place, chasing the nurses with his dinosaurs, hanging out in the playroom, taking walks around the floor WITHOUT me as he said, “You can stay in the room Mom, I’m fine.” He helped put supplies away and was Mr. Chatty. He really was quite cute and made a couple of new friends. Jake went home in really good spirits and full of energy until Saturday afternoon when he started slowing down considerably. By Sunday he was trending a fever and we were buying time, pacing the floor with constant temp checks and praying to make it to Monday morning Clinic so we wouldn’t have to go to the ER. We went to bed just under 100 and woke to a temp over it… God was on our side for sure! As I was signing into Clinic yesterday and sharing good mornings, I told the front desk ladies that I had a feeling we wouldn’t be going home. They smiled understandingly saying, “Oh no, we’ll hope not. You just got out.” Yep, we just got out. I tried my best to joke and ask my friend, Nurse Shelly, if she thought it might just be the Nulasta shot from Thursday wrecking havoc on his system and if we juiced him up on transfusions and bolus bags of fluids, maybe we could go home??? No such luck! I knew better, but I tried. Today, he’s a different kid. His hemoglobin is 8, platelets are 22, NO FEVER, but his ANC is a big, round ZERO! But he’s happy, goofy, even went outside to play on the Texas Children’s

letters. In fact, Doc Stephanie let him off the pole for a couple

of hours today in between fluids and antibiotics. If he keeps this up, he’ll be bouncing around as much as last week and driving everyone batty!

(Grins!) Then, maybe they’ll kick us outta here!!! Although the way it works, we won’t be discharged until they make sure the little petri dish didn’t grow anything and more importantly, until his ANC begins to rise. The second one is what will keep us. Last month we spent 20 days in here, 12 of them were due to a neutrapenic episode just like this. (We’ve called this home for 6 days this month already.) For now, we sit and wait. Luckily, Kate is here to play and keep us company so we have three of us to pass the time. In fact, Kate wore a mask around the hospital while we were playing to help Jake wear his.

On another note, so, many friends have asked about Warrior Jacob shirts. We plan to place another order next week as all of the shirts that Danielle organized are SOLD OUT! THANK YOU for supporting Jake and purchasing a shirt. With Childhood Cancer Awareness Month coming up in September we are thrilled that you will be honoring Jake and will have a gold shirt to wear on behalf of all kids fighting cancer. AND… Jake loves seeing all the pictures you have sent wearing your Warrior Jacob shirts. Please send more. We plan to post a picture gallery of all the pictures you have sent and continue to send us, so e-mail or FB me with them. If you missed the last order and would like shirts, please e-mail me at mardon@mardonhickford.com with your sizes and quantities.

 

Another week of chemotherapy has come and gone. I intended to write while inpatient but as well as the week went for Jake, my mind just wasn’t ready to sit and process. Two posts ago, I asked for prayer for our friend, Roderick. Since then, he has flown home to Jesus. There is no more pain or treatments or unknowns for him. He is free. But while I sat in a hospital room with tubes of chemotherapy dripping into my son’s chest, my mind kept circling to Brandy and Roderick Sr. and their heartbreak. As children of God, we know that in death there is great celebration, freedom from pain and sorrow. But those left behind still hurt. Roderick was one of Jake’s first friends on this journey. We first met him on the 9th floor. Jake was in for chemo and we were in the playroom. In comes this bouncy, bald, smiling kid in a purple LSU shirt. He sat down next to Jake and said I’m really good at Wii too, can I play? He helped Jake through levels and just sat with him, talking Mario lingo and being a kid. We were still new to this world and it made my heart so happy to see such child-like normalcy. Just two little boys playing Wii. In many ways, that was “a moment” for me as a cancer kid’s mom that things would never be the same, but they would be OK. I have told Jake that Roderick is in Heaven now and it has spurred questions and conversation. His innocent, little-boy self is

sad and even this morning he asked if Roderick gets to eat pancakes in heaven. While in clinic yesterday, Jake asked, “so Roderick won’t be here anymore, either?” He’s searching for what it means to be in Heaven and he’s asked why Mr. C won. While I have answers for many of his questions, I don’t have an answer for that one. Roderick will forever be a hero in my heart for giving Jake a friend and showing this mom that cancer doesn’t defeat our kids, it slows them down, it wears them out, but their spirits are so much stronger than this horrible disease. They continue on… whether it’s here or in Heaven. “Yes, and the Lord will deliver me from every evil attack and will bring me safely into his heavenly Kingdom. All glory to God forever and ever! Amen.” 2 Tim 4:18

 

I love quoting my kids, they’re all facinating and really just all around excellent kidos. Cameron: “Dad you’re cray cray” and yep I was and yep maybe I am. Yesterday was one of those hard days, they don’t come that often which I’m thankful for. All thoughts, conversation and actions send your mind back to Jacob, back to treatment, back to how important our next scans are, to thoughts of the 8th, 9th & 14th floor and to all the other kids and parents going through this daily heartache. So after a long day at work and with my mind not right I did what anyone would do, I started going through Facebook just looking at people’s posts reading and trying to pass a little time. While reading I came across an old buds post of this past weekend where he was down in the med center with a girl I think is his girlfriend, I say “think” because I haven’t talked to him in like almost 20 years, and thought it was a good idea to post something along the lines of, “sadly we know that area too well”, then posted Jake’s website, said hope all is well and then moved on to read other people posts. Yep, I bombed an old bud’s post of him sharing his nice weekend with, “Hey my kid has cancer, hope all is well, peace out”. I woke up this morning and was like, “You did what?” and Cam’s quote came to mind “Dad you’re cray cray”. Throw in, I’ve never posted anything on FB before, I don’t have an account, used my work marketing account, and just wow! So Jon, sorry dude if you’re reading this. I don’t know how to delete stuff off FB and to be honest I’m little nervous to head back over there. Then I start reading Jacob’s site and Mardon’s blog below. I don’t know if she’s leading this crazy or if I am. For the record I put one thing in the cart and thought she was saying superlose which was not on the label! Married going on 24 years Hon, kind of know by now when we’re shopping together I’m there to hold the kid or push the cart not add things in. So as a “hey we maybe a little crazy right now but really we’re not that crazy” I thought I’d post a gallery of what’s been going on with us. Also like to end my posts with a kid quote. Yep two of them in one post this time. Have to set this one up a little. I walk in from work last night to Jacob watching TV. Me: What’s up Jake. Jacob: Yeah my poop’s green. Sums it all up right there… -henry